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What Do You Think?

rhondaslusher1

By rhondaslusher1
in Doctors

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rhondaslusher1 Rookie
rhondaslusher1
Posted

My general dr did blood work which shown a high possitive for igg low for iag but my gi did the full panel which came back normal but I was gluten-free when she took that test. My upper and lower scope test came back normal so she doesn't consider me celiac but my general dr does??? I do well on gluten-free and horrible when on gluten. So my gi says I will do the celiac challenge. I am supposed to eat gluten for 4-6 weeks which I am terrified of and then she wants to do another upper scope test. Does this sound right? Why not another blood panel instead? I will feel so bad for these next few weeks but it seems to me a blood test would pick up just as well. Really she didn't want to do anything more and said I am not celiac as of now but maybe in a few years things will have developed which I don't want to happen.

Does this sound right? I am so confused.

Rhonda

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celiac3270 Collaborator
celiac3270
Posted

The gluten challenge is a rudimentary system. The most orthodox, textbook way to get a diagnosis used to be something like:

  • Patient eating gluten has symptoms and I think it's celiac disease
  • Blood test
  • Analyze results. If negative, biopsy to completely rule it out, if positive, biopsy to completely rule it in.
  • Negative biopsy, neg. blood means that it probably isn't, positive biopsy -- celiac
  • Patient goes gluten-free and has improvement
  • Biopsy to see if healing has taken place
  • Let's make sure it's celiac and have a gluten challenge
  • Another biopsy
  • Gluten-free for good

In reality, this is the most ridiculous thing. What makes most sense is blood work, biopsy, diet, and maybe tests later on to make sure healing takes place. But if you feel better, you should just go gluten-free with or without test results.

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key Contributor
key
Posted

Hi Rhonda,

I was gluten free for two weeks when I had the celiac panel done. My son has celiac and I was miserable when we found out he had it, so I decided to try eating gluten-free. I started feeling SO much better in just a week. No more bloating, no more gas, no more abdominal pain, nausea and fatigue got better, etc. Anyway, I haven't gotten my blood work back and don't know about a biopsy(if I will have one), because I have been on the diet for pretty much a month. I thought maybe it was all in my head, but everytime I eat it I end up sick. If my blood work comes back normal, then I am just going to stay on the diet. I feel SO much better and when I tried to eat it I was forced back into eating gluten-free by my bowels!! HA! Anyway, I want to feel good and if it means staying on the diet then I will. My baby needs help eating all the gluten free items anyway, and I figure it is nice he has someone that loves him on the diet with him.

So, I guess it is up to you whether you eat the gluten for six weeks and get rechecked. How long were you gluten free before you had the blood work done? Were you anemic at all? I do know I wasn't anemic at this point, but I don't know how fast that would reverse on the diet. I was bruising all the time and then after being on the diet for just two weeks I quit bruising.

Well, Let us know what you decide. I guess I figure if you feel better one way, then just eat that way.

MOnica

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rhondaslusher1 Rookie
rhondaslusher1
  • Author
Posted

Thanks for the reply! There are a few concerns for me. Can a normal biopsy change after 4-6 wks. on gluten? Blood test just sounds easier. And my other concern is I will be having my kids tested one is 10,7, and 1 1/2. Their dr wants them tested which I am glad but it worries me that I have all these bad symptoms when I eat gluten and not show possitive for celiac because if it is not on record how will my children and their children and so on know to beware? My 10 yr. old had shown all these signs when she was 3 and they ran all kind of tests on her and found nothing but I wasn't aware of celiac back then so I am worried for her too.

My hair keeps falling out and I called the pharmacy about some of the meds I am on and he said everything is safe, I called Krogers about my vitamins and they never returned my call? The gi says to take Biotin. I read some of you take gluten-free vitamins, can you get these at a regular grocery store? Can you refer me a name brand? As you see I am still learning.

Thanks again, Rhonda

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tarnalberry Community Regular
tarnalberry
Posted

The issue is getting the antibodies from the gut into the blood stream so that they show up on a panel.

If damage is being done at an appreciable rate, and it's true celiac, not a separate gluten intolerance, then a good biopsy may well detect the changes to the villi far before the antibodies are able to escape the gut wall and become detectable in the blood. (There's evidence that one can produce antibodies to gluten - hence, be gluten intolerant - without (at the time) it causing damage to the intestines (which is a definition of celiac disease). That doesn't mean you should continue eating gluten, of course! Just that celiac may not be the sole problem people experience with relation to gluten.)

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